Expert: Mary Gordon - 4/18/2010

Question
My mom is 84, has had a diagnosis of ?AD for 8 years now.  She has been incontinent of bowel and bladder for a couple of years, and can only eat pureed foods (for the last 2 years as well).  She is presently in a nursing home and all she seems to do is sleep.  She will sometimes be awake but totally nonresponsive to my questions, just staring at me.  She just recently had surgery to resect a colon tumour (2 months ago).  Lately it seems she has been losing weight very rapidly, although her appetite is good. I'm not sure how much of her weight loss is due to the AD and how much could be due to the GI problems she had been having pre- and post-op.  
She is at the stage now where she just sits in a wheelchair and leans way over to one side (which has gotten worse over the last year).  
In your experience, are these symptoms indicative of last stage AD or could they have been due to the cancer and subsequent surgery? If they had been due to surgery should she have bounced back by now? She still continues to lose weight, although she eats.  Also, how long can this last?  She can still hold her head up sometimes, can transfer from wheelchair to bed, but that's about it.

Thanks so much for your time.

Answer
Hi Char, sounds like your poor mom is closing in on the last stage. There are a number of indicators for the final stage. One is continuing weight loss no matter what feeding strategy is tried (i.e. high calorie foods, careful hand feeding, frequent small meals, supplements etc.). The person becomes very thin and frail. Another is a pattern of repeated infections developing as the immune system starts to break down - it could be skin infections, UTIs, pneumonias. Generally, the person needs propping or they will slump over - quite often, they will get to the point where a wheelchair is no longer practical because they can't sit up properly and they will spend most of the time in bed, in bed, propped up there as well, or they will slump over or slide down. Often, they can't really even hold their heads up. Because they no longer move around enough on their own to shift their weight, they need to be repositioned frequently or they will develop bedsores on pressure. Specialized mattresses and pads can be helpful. The person will sleep more and more and be less and less responsive and aware of their surroundings.

It is very hard to predict survival time, but of course, your mom's situation is further complicated by her cancer. The cancer may be contributing to her deterioration. General anesthesia usually completely whacks people with dementia, and the effects are often permanent - i.e. they dramatically lose ground and never recover it, even after they heal from the surgery.

Have you had a frank talk with her doctors and the nursing home about coming months and what the options are? What do you want the next months to look like. Do they have hospice/palliative care programs that she could be eligible for? I very strongly suspect she could qualify for hospice type care at this point. You may want to look into it. It can be wonderfully compassionate and supportive, for both the person entering their final months, and the family.

The question for you has to be what were her wishes, and what you are ready for as a family. Are you ready to stop active medical intervention for her cancer? What quality of life does she have? What discomfort and distress could ongoing medical procedures cause? What is the goal and purpose of how her care is being managed? If she developed an infection would you want her taken to hospital? Tubes, tests, procedures? If she stopped breathing or her heart stopped, would you want her rescusitated? You have to really look into your heart and think about what is the kindest and most loving thing to do. Just because we can throw medical technology at the frail elderly to keep them going, it isn't necessarily what they would have wanted for themselves, or what makes sense in terms of quality of life. Sometimes longer life isn't necessarily a positive.

We have a very hard time just being still. If the tide is going out - and I think it is - do you want her quiet, loved, peaceful and free of pain while you just hold her hand and let it happen -or do you want to fight - and if so, for what purpose. What would be the benefit that would make the potential suffering worth it. Would a fight be about her, or about other family members not being ready for her to go? I'm not saying there is a right or wrong answer, because this is a very personal thing. Having been through this, I do have a bias. End stage dementias are just not like other health issues - there are just so many emotional and moral issues to struggle with as a family.

When you look back at this time period, you have to be at peace with your own choices. However, you do have to think very hard about the choices and be clear about why you are picking a particular direction. You also have to try and separate your own fears about loss and grief and end of life from what your heart tells you is the best for your loved one - and only you can answer that question.

I would very strongly suggest having a care discussion with her doctors and the nursing home and encouraging them to be completely honest and frank with you about the prognosis, what the options are and what they can offer - and what they would do if it were their loved one. I know this is very upsetting to see her like this and not know what the best thing to do is. Your mom is very lucky to have a daughter so concerned about her wellbeing. Wherever she is, she knows you love her.

Thinking of you.

Mary G.